A Woman's Journey With Rare Disease

Disability & Presidential Elections

This is not going to be a political rant. Instead, I want to focus with specific examples on a clear lack of attention & glaring oversight that often happens on a particular issue in the political arena. This is especially with presidential candidates as a whole. The lack of addressing disability issues & ignoring the disabled vote as a whole.

Very rarely are people with chronic illness, rare diseases, invisible disabilities, or people with disabilities ever acknowledged as an equal voting voice (when we should be).

This is particularly true outside of umbrella or overarching issues of importance & common ground to us all. Things like healthcare & social security for example. We are convenient props to acknowledge in those discussions, but what about outside of it?

In spite of ADA & other disability laws there are unique challenges that face our populations that are swept under the carpet & ignored far too often, especially by politicians.

Issues like violence, employment opportunities, disability income (or lack there of) are never fully addressed.

Unless it’s to point out instances of fraud or how this population constitutes a problem to society with just solely being.

These stigmas are dangerous to perpetuate because there are plenty of us even if we are unable to work a “traditional” job in an (ableist) sense often are still very active contributors to society.

Some of us have & continue to work in the same jobs as our peers & counterparts, (with accommodations or not). Yet, what if the worst happens & we are rendered unable to work for some reason or period of time? Even after qualifying for benefits (which came out of our checks for years before we drew them out), we are labeled with slurs & stigmas for needing to utilize the few safety nets we do have at our disposal. Why?

To pick apart the current field & how limited & ignorant they are to these types of issues, let’s start with Marco Rubio.

This article in the DesMoines Register infuriated me. Fraud is an easy offering point to avoid discussing real issues. Passing the buck insinuating we are all liars & goldbrickers is an easy way to avoid having real policy discussions. This is especially outlandish when you know he grew up with a disabled grandparent. Was his grandfather (to him) a drain on society too? (He seems to paint the same broad stroke with the statements he makes that he may think this is true.)

However, the most upsetting point this article made was Rubio’s completely out of touch & outlandish assumption that high risk pools are a viable alternative for healthcare coverage. This simply is not true. Let’s take disability out of this equation for a moment. Even if you don’t work in insurance, anyone who has a had a few auto claims or home repair claims knows that high risk policies lend themselves to more restrictions & few benefits. They also result in higher premiums for a poorer policy overall. It’s the one area where there is actual parity amongst insurances.

Tell me how is someone on disability income is supposed to afford a higher premium than they have now in exchange for a plan that will barely cover what they need, if it does at all? It doesn’t make sense financially or otherwise.

This obtuse line of thinking angered me to the point where I actually directly tweeted his Twitter account to argue & call attention to his specific point & how ridiculous it was. This is something I have never done before with any candidate.

Then we have Donald Trump. We all know where he stands on such issues. We’ve seen the video of him mocking the New York Times reporter Serge Kovaleski. Body language doesn’t lie. Trump can deny it all he wants but his body language was mocking people with disabilities very clearly. Where’s the leadership in that?

Yet most people may not be aware of the fact that Trump used to complain to past mayors about disabled veterans & their food carts in New York City. Even when they were legally stationed there. (Even the NY Post called him out for this in 2004.) God forbid they ever tread in front of one of his properties trying to earn a living. “Deplorable,” he says. I guess he’s allowed to make money, but others are not?

Not to mention his recent charitable fundraising for veterans doesn’t go to a named veteran’s charity but back to the Donald Trump Foundation. Sorry if I’m not buying into his sudden self-professed love of veterans.

The other candidates in the GOP ticket I don’t feel strongly enough about to pick them apart to this degree. They all seem to have similar issues & espouse stances similar to either Trump or Rubio. No real concern or care for this constituency, period (as a whole or in part). Instead, they seem to bolster the same stereotypes & stigmas that are part of the problem to begin with. One such stigma they seem to champion with coded (or open) messaging is that being disabled or poor, (or worse yet both) is dangerously close to being perceived as an actual crime against society.

Now we turn to the Democrats. After all, turnabout is fair play. Both Bernie & Hillary have long championed healthcare issues. They seem to be more open & less prejudiced in thought but outside of that, there’s no real clear change or real policy in place.

To me, that doesn’t seem to go far enough now to addressing the challenges of living with a disability in America on a daily basis, sorry. If we’re going to attempt to call out marginalization then we need to do that as a whole, period. For all groups, including the disabled.

Both candidates will talk about disability in the context of preservation & protection of services like Social Security Disability, Medicare, & Medicaid, which is important. They fail to see however, that not every disabled American qualifies for these services to begin with. So both candidates are far from being truly inclusive & aware in solving this community’s challenges.

They do however, appear to be more open to address issues when directly asked about them. Yet there’s still no real actionable platform or policies on the Democratic ticket as of yet, if we’re being completely fair & honest. They seem to be afraid to talk about it as a separate issue on its own much, if at all, unless someone else brings it forth to them directly.

(I am not even going to touch on voter access & accessibility issues that could impede people from actually being able to exercise their voting rights. That’s subject for another post but also a hidden issue to most of the general public that does need to be addressed.)

David Perry is a journalist I respect & follow. He’s very attuned to these issues, but also the general scope of how disabilities are covered in today’s media. His most recent blog post does a much better job of framing a conversation on this subject than I’m attempting to do here. His Twitter feed is a valuable resource I turn to often.

I also learn much from Gregg Beratan. Both about successes & even failures within the community itself. He’s not afraid to call out an advocacy organization if they are contributing to problems & stigmas with their stances & advocacy approaches.

He’s also helping mobilize the community to raise awareness & advocacy in this election cycle by hosting some tweetchats with Alice Wong. She’s another person I deeply respect & admire in this community.

All 3 of these people do a great job of keeping our community informed about important issues like this.

Though I feel a bit green & new to having such a strong voice on these issues in particular, I am getting good guidance. I will find my way there eventually thanks to them.

I have to admit, this subject was sitting in my stomach & upsetting it for quite awhile. I just wasn’t sure the best way to address it without turning it into a political punching bag or catfight.

I also believe even basic discussions amongst family & friends to raise awareness that such schisms exist are a great start (at the very least) to try & issue a call to action for a national conversation.